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My friend came up with a really good idea of seeing what it is like to live with someone else’s pain – so that’s exactly what we did. We called it Spoonie Swap and spent the day doing the things that each other did to cope with their chronic pain.
I’ve recently learnt that using the spoon theory is not always best when you have chronic pain as no two days are the same so your energy levels will be different. But for the purposes of this challenge and appropriate alliteration, I’ve left it as Spoonie Swap as this will make sense to a lot of my readers.
Now, of course, we didn’t actually have the other person’s pain. The point of this challenge, experiment, research, whatever you want to call it, was to understand how the other person coped and to see what it was like having to think about and do all the different thing to manage that pain. It was to give us a different perspective on how other people cope, and to realise everything we do as individuals to cope with our own pain.
We began by typing up everything about our pains – what it is, when we are in pain, what we do to manage that pain. This was so we had a pretty good idea of what we needed to do to take part in the challenge.
Bearing in mind this was all on top of everything we are already dealing with, so we made sure we did the challenge on a sensible day and not when we had bad flare-ups with our own pain.
We asked each other lots of questions to fully understand what it was we needed to do, and even on the day we did the spoonie swap, we fired questions at each other as different things or situations cropped up.
Karen lives with coccydynia for the day
As we talked about in Part 1 of the Spoonie Swap, Karen has Temporomandibular disorder, also known as TMD. This is a condition that affects the jaw and ear, and it is painful and difficult to open your mouth. It very often causes pain in other areas of the face, including headaches. The pain is often worse when eating, yawning, talking and when there’s any kind of pressure on the face.
For this challenge, Karen spent the day living with coccydynia which is what I live with. Basically, I am in pain whenever I sit down. I also cause additional musculoskeletal pains (in my neck, shoulders and legs) by having a bad posture through avoiding my sitting pain.
I also have endometriosis, which causes severe stomach cramps, fatigue, and brain fog; and a hiatus hernia which I describe as being like a sharp pain in the middle of the chest as though someone is standing on me with a stiletto heel. Stress and certain food sets off the hernia pains.
Karen considered the pain management for these pains on top of dealing with the sitting pain.
Karen’s spoonie swap observations
How did you feel about doing this challenge?
I was nervous but felt ready to experience someone else’s pain, at the least to take my mind off my own! I was really curious about how coccyx pain, endometriosis and hiatus hernias could impact singularly and collectively.
How did you prepare?
The day before I had a think about what activities I would be doing the following day and how my new pains would impact that. I knew I would be driving and gardening. I put an appropriate shaped cushion (I have a big U shaped travel pillow, so it essentially has a space missing for coccyx support) in a spare cushion cover.
I made sure my gardening activities didn’t require any sitting or squatting for long periods (granted, in the real world I wouldn’t just be able to leave all those jobs out for someone else to do!). Fortunately I don’t eat a lot so I was less worried and prepared for the hernia pains after eating.
What different pain management methods did you have to do?
Rather than using painkillers, I had to move my body about, contort it to stop the pain in one place, which ultimately led to getting pain elsewhere!! It was also a lot of preventative measures, so rather than dealing with the pain, it was about doing things to make sure that I didn’t make it any worse.
There was a lot of preparation too, thinking about what activities I would be doing made me more organised and ready for the day of pain. I also couldn’t wear things I normally wear, I had to go for loose fitting clothes so it didn’t aggravate the coccyx pain. These aren’t things I would have thought as pain management.
“Using a cushion in my car affected my sitting position completely. I was elevated and this meant I had to adjust my mirrors and move my seat forward. But I thought I’ll see how I get on. Consequently I had neck, upper and lower back pain from contorting myself to use my mirrors.”
How did you find it mentally?
Soooooo frustrating! I was mad at myself if I forgot and sat down without thinking. I started to feel low when I couldn’t find a comfortable position to stay in; I just wanted to have something to eat and I couldn’t digest properly, I felt pretty sad. It was upsetting not being able to comfortably relax to help endometrial pain, I could basically stand or, stand 🙁
How did you find it physically?
OUCH! It did make me realise how much of the day I do actually spend on my feet, and, therefore, how much I take for granted that I can just sit for two minutes whenever I want.
Pushing myself up from being seated took its toll on my arms and my ankles and feet were permanently numb when I kneeled or crouched down instead of sitting.
All the secondary pains were awful, getting pains up the opposite side of my body to the way I was leaning was agony; I’d just swap the pain to the other side of my body when I switched to lean the other way.
“I sat down to put my socks on without even thinking. It made me realise how much stuff we do sitting down.”
What did it make you fearful of?
Getting old!!! I forget that we wear down physically and my back might be one of the first things to go. I’d be relying a lot on my upper body strength, which I don’t have a lot of. Your back is so integral to all of your body movements. The fear means I will be looking after it more.
What weren’t you able to do?
SIT! I also couldn’t eat quickly in case I got indigestion due to the hernia and its pain, and also because of the way I was sitting. I couldn’t lay down or sit properly to nurse the endometrial pain I would have had. They’re my go-to positions when I’ve got those pains. I also couldn’t walk too quickly as Alice says this sometimes aggravates her coccyx pain causing sudden sharp muscle spasms which are extremely painful; I’m a really fast walker so it was a challenge to slow down and try to keep at that pace.
What was the hardest thing about this challenge?
Remembering that I couldn’t just sit whenever I wanted to. I had to think of the consequences of sitting and how that would impact on the rest of my activities and day.
When I forgot my cushion when I was about to drive, I had to run back in for it and made myself late(r than I already was, hehe). I couldn’t rest properly after the manual garden labour, I had to catch my breath and have a drink standing, in the cold wind; that was horrible.
Walking a bit slower was hard work, I’m used to overtaking people and scooting past them in crowds – it was hard to stick to their relaxed pace!
What good or positive things did you see or feel?
It’s made me really appreciate how much your mobility is affected with coccyx, back and other musculoskeletal pain – the positive being that I will consciously have more patience and consideration for anyone suffering with any form of it.
Strangely, it was positive to realise how active I am on a daily basis. I knew I moved about a lot, I have a high step count. It was good to know I wasn’t a sofa slob! I’m not afraid to say I felt I took more negatives away than positives though, which is really sad.
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What surprised you the most about doing this challenge?
That I managed to do it nearly all day! I have an awful memory, so the handful of times I did forget I didn’t get too mad at myself, but was surprised how easily I got into the mindset and acted that way.
I was also surprised at how quickly secondary pains come on, also how easily my body adapted when they did. I was quick to move myself without whining (too much!) and got on with it. The difficulty in swallowing food because of the way I was sitting was unpleasant, it hadn’t crossed my mind at all before the challenge.
Sitting is something you do without realising it. We sit down for meals, to relax, watch TV, when driving to from place to place, but doing this when you are in pain is not relaxing or easy at all – I don’t know how Alice does it!
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